POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: jm1953 on January 17, 2011, 07:51:22 pm
-
Hey members,
I don't take stock in having stable CD 4's 700-1000, no viral load, poz since 1987, and on meds since 1996 as a green light that every thing is alright. I'm happy I'm maintaining the numbers, but what difference does it make when you are sick all the time.
In the past year I have been diagnosed with skin cancer, now being treated, chronic sinusitis, lipoatrophy in both feet, like walking on bone, requiring orthodics I paid $450 for and possible surgery down the line, blepharitis an infection of the eye, moved to chronic three kidney disease, and now have high blood pressure, not to mention a bunch of skin problems my derm can't figure out. And then of course the fatigue. Oh and then nerve damage in my right wrist.
My life involves going to the doctor or having procedures done, plus seeing my therapist when I can. So no time to see my friends hardly, except my dad. Not much support for HIV people where I live that I can find. This isn't the life I had in mind, even as long termer. Sometimes wonder if it will turn around or just get worse.
Just had to get this off my chest. Maybe some of you relate!!!!!
Trying to keep my eye on the positive things but it's a struggle.
Hope you all are doing a lot better than I!
Best,
Jeff
-
Hey Jeff,
I can relate to feeling like your health is compromised, even though your numbers are stable. I've been poz for 21 years, and my numbers are stable, but I have a lot of health problems. I also have lipoatrophy on my feet, as do a few other LTSers, and I also have severe PN, so I always have to be careful to wear something on my feet, as I don't always feel it when I bang my foot (hence, I've broken every toe, and my ankle a couple times). Also, I had a 5-speed little Nissan I had to give up, because I couldn't feel the clutch, so I was unable to shift gears. I also have avascular necrosis in both knees, and at some point, will have to have knee replacements (which I'm totally not looking forward to). I have chronic problems with my sinuses, lost my teeth years ago, and have osteoporosis. I also have diabetes, which was made worse by a former med I was on, and have diabetic retinopathy in one eye. There are other problems, but I believe I've bitched enough for now. :) Anyway, I get ya. Seems like our bodies would be in better shape, if someone only went by our numbers.
All we can do is try to do our best, and that's it. Hang in there!
L-
Betty
-
Jeff
Damn sorry you have skin cancer, that's a scary thing to have to deal with. I'm glad your Dad has been supportive. All I can say is hang in there and to remind you to keep fighting.
Your post is a damn good reminder that NUMBERS can be so deceiving. It tends to lull the HIV patient to sleep, and to not worry about things. . I hope that we continue to stay aggressive with our health care. . Your post is so important. I hope the younger ones in here are taking note.
Thanks for being brave and posting this. Please keep us informed on your progress!
All the best,
Jeff
-
Hi Jeff,
I definitely can relate.( 25 years here going on...) I've have been there and done that with the skin cancer. I have been scraped , cut, stitched, frozen, so many times can't keep track, and have a few scars to show for it. Fortunately, I haven't noticed anything for about the last 8 months, so I am thankful for that.
I have also lost a lot of the padding on the bottom of the feet, but it only periodically causes me problems. I still enjoy keeping active, and making sure I walk everyday is an addiction for me. When I am not moving, or keeping active, is when I feel the worst. I have mild to moderate neuropathy, which can be trying at times.
Fatigue, is also an issue at times. Trying to work 40 a week , on the graveyard shift is pretty tough. I am hoping that I can continue to hold out, but work certainly has it's challenges too. At 59 years of age, I have 3 more years to go, before I can, start collecting Social Security, so hopefully, nothing major will happen prior to that.
I am not having to many doctors appointments, at the moment, except for the normal 3 month blood tests. I am having some neurological issues, which I am going to bring up again to the doctor tomorrow.
I have no problem remembering things from much earlier in my life, but sometimes, I can't remember where, or what I had for lunch, 6 hour earlier. That's scary !!
Been undetectable since 2004, T-cells always seem to be in the high 290's to 350 range. Percentages, seem to fluctuate, in the 12% to 15% range. I have a feeling nothings going to improve much there.
Cholesterol, for the most part in under control . Blood pressure, with the help of Hydrochlorothiazide, is back under control.
I agree with Betty, we just try the best we can, take care of ourselves, and face the challenges as they happen, that's what makes us long term survivors. I know that life can be a struggle, for sure...
Hang in there/stay tough, and don't give in---Ray
-
Hey guys don't give up. All person will come to an end in that way even if they are negative.
-
Metekrop,
I'm sure your sympathy is quite welcome, but please read the posting guidelines for this forum:
http://forums.poz.com/index.php?topic=11166.0
It is one of the restricted forums, a safe place we preserve for long term survivors to share their experiences and support one another. Please don't post in this section.
Thanks,
David
Moderator
-
Hey Jeff,
Yep, I have felt much like you feel.
I, too, had issues with skin cancer and, like Ray, have been scraped and frozen more than I care to remember.
Right now, my knees are killing me. It is probably arthritis and the exceptionally cold weather has not been friendly. I have been taking prescription strength Naproxen to the tune of 750 mgs a day, every day.
Of course, now I am having stomach issues from it.
The neuropathy has been around for a long time, as has the lipoatrophy and lack of padding on my feet. (OUCH - I won't even think of walking barefoot).
My legs ache and the best reason we (the doc and I) can come up with is my elevated CPKs. I can't seem to get them down to normal again, but at least they aren't life threatening any longer.
My buffalo hump is annoying, as is my gut. Not much I can do about them, though.
The fatigue can be debilitating at times.
On a brighter note, my liver enzymes and liver functions have returned to normal, as long as I eat a mainly fat and cholesterol free diet (read: vegetarian meals or fish 99 percent of the time.)
So, its no cake walk.
But, at least I am here to bitch about it.
Hang in there. It is about all we can do.
HUGS,
Mark
-
Im sorry your having a tough time Jeff , I feel like you do many days .
Do you guys remember years ago when we told our doctors we were in pain and they would look us straight in the eye and tell us no we weren't in pain and that HIV wasn't painful .
I was talking to my friend who is a doctor , he used to have a lot of poz patients including me in the 80's , he told me how he struggled with trying to treat pain when us guys complained about hurting but other than an HIV diagnosis he couldn't identify a reason to give pain meds . It was a huge dilemma for him .
Sorry for the hi jack , this thread just took me back a few years and how far we have come .
-
Metekrop,
I'm sure your sympathy is quite welcome, but please read the posting guidelines for this forum:
http://forums.poz.com/index.php?topic=11166.0
It is one of the restricted forums, a safe place we preserve for long term survivors to share their experiences and support one another. Please don't post in this section.
Thanks,
David
Hi David,
I am no less than the age of people in this forum. I am also about more than 20 years with HIV though I strart meds justly recently. Also I am going into becoming in these groups so my brotherly comment above should I think be considered as I am a long term servivor and can serve the community without any barier. Thank you anyways.
Moderator
-
Hi David,
I am no less than the age of people in this forum. I am also about more than 20 years with HIV though I strart meds justly recently. Also I am going into becoming in these groups so my brotherly comment above should I think be considered as I am a long term servivor and can serve the community without any barier. Thank you anyways.
Moderator
Metecrop,
You told us in a post (http://forums.poz.com/index.php?topic=31941.msg392171#msg392171) last March that you were diagnosed in 2000.
The criteria for being permitted to post in the LTS forum is not your age or how long you may think you have been infected, but when you were diagnosed.
You do not meet the criteria of having been diagnosed before 1996. Please do not post in this forum again. If you persist, including posting in order to reply to my post, you may be given a time out.
If you feel the need to discuss this further, please feel free to PM me.
Thank you for your cooperation.
Ann
-
JM,
Sorry to hear that you are having a rough time of it.
It appears that good numbers do not necessarily translate to good overall health.
I wish you the best.
Take care.
-
Thanks everyone for your responses. I appreciate them so much. Boy, I feel kind of foolish complaining about my stuff compared to some of the really serious health issues others of you are experiencing. Your strength and bravery is amazing, and something I truly admire and hope to aspire to. Thanks for that. And I wish you my very best and support.
On a more positive note, I saw a specialist allergist/immunology doctor yesterday who actually took a real interest in my complicated case. The last one I saw blew me off. The appointment was two hours and she left no stone unturned trying to get to the root of what is causing this strange rash, or hives as she sees it. She actually came up with two possible names of what I have which is a first after all the specialists I've seen for this problem in the past two years. I feel vindicated almost. Like Dorothy on that episode of "The Golden Girls"when she had Chronic Fatigue Syndrome and she kept being blown off by a bunch of doctors until one finally figured it out. Just knowing the name of what I might have makes me feel better, something to start from, like Dorothy, if you remember that episode or are a "Golden Girls" fan like me. We'll see what the battery of tests they took reveal in the coming weeks. In the meantime, I feel so lucky to have found her, and wish there were more doctor's out there as caring as her.
Thanks again for your posts. Guess we just need to all hang in there together and be thankful we've gotten this far!
Best to you all,
Jeff